UK: Human Resources Grapevine Podcast: From Long Covid to ME

From May 2023

https://www.generali.co.uk/Media/Podcasts.html

article and partial transcript here

https://www.hrgrapevine.com/content...mployer-support-generali-uk-employee-benefits

 

"Beverly Knops. Executive Manager and Senior Specialist Occupational Therapist Vitality360 . DipCOT, MRCOT, MBACME ... "

 

And we are supposed to be trusting BACME now??? Not on your Nellie. Vitality 360 is the same old Sh*t - conflate non specific fatigue and insomnia with ME - and sell the misinformation to employers.

We should be light years beyond that nonsense now.

As I have limited years on this earth at this point (age) it's making me even more fearful for my future that 2 years after the new NICE Guideline that opportunists are still exploiting the 'ME = fatigue/tiredness/symptoms common in the general population' BS.

At my worst (well, at 70% of my worst, because at my worst I was not conscious or capable of any thought or movement at all) I used to reflect how totally horrific it must be for children with 'whatever it was I had' - and also reflected how difficult life must be for elderly people who were as frail as I was.

Now I am in actual fear of eventually having to go into a care home - and being chivvied/bullied to be more active than I can be. For many ME sufferers sitting up at a table to eat is either impossible or a form of physical labour so hard it may as well be punishment. And I have no hope that care home management or staff will be educated about ME enough to not be a danger to me. I am not there yet. Frankly I never want to be in that position again - being so sick and helpless and dependent on clueless carers, or no one, as it was for the first 2 years of illness).

It seems there has been no progress in the 30 years I have been sick - and we can't survive on hope. Why the hell should we?

 

I was required to engage with V360 as part of my Income Protection award and to be fair, my experience overall was positive - despite my concerns going in.

I had 3 Zoom sessions with Beverley Knopps (the assessment was split at her suggestion so as to minimise the impact on me), who was very pleasant, listened to my history and made various practical suggestions about management approaches/techniques. We discussed up front, my concerns about having been referred to them, including a very frank conversation about CBT/GET (as this was just as the draft NICE GL had been released) which were never mentioned again.

At the end of the assessment, she said, it was clear I wasn't able to work, which would be the report going back to the insurer (at which point I had a little weep of relief) and that other than counselling, there was nothing they could really offer me. I was then referred to a counsellor, who I spoke to every few weeks for about 18 months, which was really helpful in coming to terms with the life changing illness that ME is and developing/refining management techniques - challenging my views of what I could do and reducing activity levels rather than increasing them.

At no point in the best part of 2 years I was under them, did I feel any pressure to return to work (other than the pressure I was putting on myself), do anything that wasn't in the best interests of my health and well-being. It was made clear to me early on that my employer wouldn't want me back unless I was able to reliably return to work. A lot of which was what I needed to hear.

The reports that they produced every 3 months to the insurer were fair and accurate reflections of my state and engagement, were approved by me before they were sent, allowing me to ask for minor changes as needed.

I could write a book about the Income Protection claim process and the horror story that became (and periodically still is), but the V360 experience, including dealings with Knopps, for me at least, an informed patient in the early stages of my illness, was broadly speaking, positive.